Friday, January 28, 2011

A Jar of Memories

As the parent of a sick child, you've probably developed a thick skin.  I know that I have.  A normal life for us is not so normal for other people.  We have no problem canceling plans at the last second because the IH'er in our family has taken a turn for the worse.  We might feel mild disappointment at the canceled plans, but hey, we know how much worse things can be!  Friends, and even family, exclaim how disappointed they are that we have to cancel.  They sympathize and tell us that they understand how disappointed we must be.  The truth -- we're not that disappointed in canceled plans very often.  We're used to it.  In our family, we save the sad emotions for the times when we're holding a sick kid suffering unbearable headaches or severe nausea or a dizzy spell or random pains or . . .  I think that you get it.

I don't even cry anymore.  My tears have dried up after years of helping our daughter deal with IH.  I feel fortunate.  She has avoided surgery -- how lucky is that?!  I know far too many IH patients that have had to undergo multiple surgeries for shunts, shunt failures, infections, and revisions.  I am truly grateful that the medicines have helped her avoid surgery.  The medicines barely manage the high pressure and she's come dangerously close to needing a shunt a few times.

So why do I bring all this up?  Because I cried like a baby the other day.  I was searching through my jewelry drawer and came out with a baby food jar!  It was decorated with cute little Mother's Day stickers and ribbon.  Nine years ago, my daughter's teacher had the kids make a jar of favorite memories for their mothers.  What a sweet gift!  Unfortunately, I knew what that jar held.  Did I dare to open it and read all the memories again?  Oh, why not?  After all, my tears dried up years ago.  Big mistake!

In the jar were many pieces of brightly colored paper with one memory on each piece.  In her childish handwriting, she had printed:

  1. I remember when you were with me at the MRI.
  2. I remember when you were with me when I had to get my 1st spinal tap
  3. I remember when I threw up and you got me an ice pack
  4. I remember when I had a stomach migraine at the cabin and you helped me
  5. I remember when you were with me when I had to get blood drawn
  6. I remember when you held my hand when I got stitches
  7. I remember when you helped me get over my broken arm
There it is.  Everything that's not normal about chronic illness.  Even the stitches and broken arm can be blamed on IH because the doctor tried Topomax which severely affected her reflexes and she kept getting injured.   Just last week, I had been patting myself on the back for raising a chronically ill kid with a healthy attitude.  She has learned to persevere through very bad days.  She seldom asks to stay home on a bad day.  She's learned to live in the moment and let friends distract her with laughter, even when in pain.  She's learned to manage a full workload even when sick.  She's learned not to dwell on how things could have been.  She's learned how to be happy in spite of all the obstacles placed in front of her.  Perhaps it has nothing to do with me.  After all, she doesn't know what it's like to feel healthy for longer than a week.  But that memory jar reminded me that all is not well in our family.

The jar is safely back in the drawer for now.  I don't keep it to remind me of sad times.  I keep it to remind me that I've done a good job as a mother!  We parents cannot stop the world from hurting our children.  When they are sick, they have to suffer through many invasive procedures.  We can't make it hurt less, but we can be there with them to help get through it all.  In the end, that's what they remember  -- how you helped them by being there.

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